Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.

Parents and staff, please nominating a Labatt Family Heart Centre nurse or allied professional (social workers, respiratory therapists, physiotherapists, occupational therapists etc) who moved you with their family centered care practices for the 2011 Sasha Bella Award for Excellence in Family-Centred Care.

The award is intended for staff who demonstrate exemplary interprofessional family-centred practice and who has cared for a child and family whose hospital course involved multi-organ, multi-service and palliative challenges.

This award is now in its fifth year and is a way for families to give back to staff for their outstanding professionalism and humanity.

Any staff member or parent may nominate by providing a brief letter outlining the suitability of the nominee through an email to Patricia Sutton (patricia.sutton AT sickkids.ca).

Nominations are being accepted for only one more week so please spread the word.

CanChild, the Centre for Disability Research, recently published Health of Families of Children with Disabilities: National Roundtable Report which highlights care for the caregiver as a critical and increasingly vulnerable element of child health and safety in a family centered care model.

Executive Summary
A surprising number of Canadian children grow up with chronic mental or physical health problems, although estimates of prevalence vary dramatically across the many available definitions. The number of Canadian children aged 0-19 years who have a physical disability is estimated to be between 7-8%, while 10-12% of children have some degree of cognitive deficit or learning disability. While different definitions of childhood health problems will continue to be applied for different purposes, it is clear that a substantial proportion of Canadian children and their families must cope with chronic childhood health problems.

Caregivers play a central role in the lives of children, and the well-being of each is inextricably linked to the other’s well-being. Caring for a child involves considerable demands on time, energy, and finances. Such demands can, however, be much greater for parents of children with disabilities. Clearly documented demands include increased time (everyday care, medical appointments), higher medical costs ranging from 2.5 to 20 times typical amounts, greater childcare challenges (respite care, accommodation in regular programs), more employment constraints (work schedule, choice of occupation), lower income, as well as greater stress,
anxiety about the future, and lack of sleep. While many families cope well with these challenges, these additional personal and financial pressures can amount to a significant burden.

A growing body of literature is now revealing that challenges shouldered by families of children with disabilities can be associated with an increase in a wide variety of both physical and psychological health concerns. Caregivers of children with disabilities have been shown to report a greater number of chronic physical conditions as well as exhibit poorer psychological health, including greater stress, distress, emotional problems, and depression compared to caregivers of children without disabilities. These findings are consistent in showing that there is an important relationship between child disability and caregiver health.

On November 5th, 2010, the Ottawa Hospital Research Institute (OHRI) hosted an invitational roundtable on the health of caregivers of children with disabilities funded by the Canadian Institutes of Health Research (CIHR) and Health Canada. The purpose of this roundtable was to engage parents, researchers, clinicians, policy makers, and representatives of non-government organizations in a process designed to facilitate the development of tools and approaches to support families of children with disabilities.

The roundtable agenda was developed around four key objectives that were successfully achieved: (1) Discuss the findings of recent CIHR-funded studies focused on the health of Canadian caregivers of children with disabilities. (2) Consult with stakeholders and decision makers about what issues need to be informed by future research. (3) Initiate the development of practical, research-based knowledge tools and approaches that will be useful for supporting the health of caregivers of children with disabilities. (4) Improve links and exchanges among
researchers, policy makers, and caregivers committed to improving the health of caregivers of children with disabilities.

Participants first engaged in an activity individually and in groups to focus on “What needs to be done?” They then identified seven priority areas to support families of children with disabilities. Next, they brainstormed and discussed “What action can we take?” in each of the priority areas.

Several key messages and recommendations emerged from these discussions, and these can be summarized as follows:1. Increase caregiver capacity to navigate effectively through the health care system.
2. Reduce caregivers’ feelings of powerlessness.
3. Embed caregiver health into existing policy frameworks.
4. Identify key messages for dissemination.
5. Provide caregiver relief / respite.
6. Promote system change to improve support for caregivers.
7. Develop a theme template to organize information on existing programs and policies across the nation. [emphasis added]

This meeting report includes the discussions and group work of these seven priority areas.

The Report of the Bereavement Care Task Force into bereavement practices at SickKids identifies practises, policies, inconsistencies and program needs. It supports long time parent requests such as a yearly memorial, a celebration wall (much as we celebrate organ donors) and peer support programs and to make all this and more happen, the report recommends hiring a bereavement coordinator. The report focuses on bereavement care; hopefully palliative care will be the subject of a future report.

Executive Summary
A review of bereavement care at SickKids was initiated in 2009 with the creation of the Bereavement Task Force. The aim of the review has been to conduct a thorough examination of current bereavement practices at the hospital, to undertake an external survey of best practices in bereavement care, and to make recommendations for enhancements to existing practices where appropriate.

This report details key findings of the Task Force, including existing best practices and areas where enhancements will result in improved patient and family care outcomes. Recommendations put forward in the report are informed by the findings of the review. They seek to address some of the identified gaps and to ensure that the standard of bereavement care is consistent across the hospital and with best practices.

The review undertaken by the Bereavement Care Task Force included a comprehensive examination of existing practices and resources at the hospital, as well as an external survey of best practices and a literature review. Staff from across the hospital and across disciplines were interviewed, including: doctors, nurses, social workers, psychologists, bereavement coordinators, members of the palliative and bereavement care team, chaplains, members of the protection and transport services, child life specialists, members of the division of pathology, and representatives from the Coroner’s Office. Staff were interviewed about current bereavement practices, standards, policies, and protocols.

Staff were also asked to identify families who had experienced the death of a child to be interviewed. Ten families from varying programs and clinical areas across the hospital were interviewed. Six of the interviews were conducted in person; four were conducted by telephone. All of the families interviewed had experienced the death of a child within the past three years, and the ages of the children at time of death ranged from three weeks to 16 years. The families came from diverse backgrounds, and one family required interpreter services to complete the interview. Families were asked to share their experience of bereavement care at the hospital. The interviews were guided by pre-established questions and prompts.

This report describes the work and findings of the Bereavement Care Task Force with regard to the current state of bereavement care at SickKids, as well as current thinking and evidence on bereavement care best practices. Both the strengths and gaps, with respect to the bereavement care being provided at the hospital, have been investigated and documented.

The report recognizes that families value many of the existing bereavement practices, such as legacy creation, follow-up, active support, and timely and compassionate communication. It also indicates that there are considerable and
problematic inconsistencies in the quality of bereavement care being provide to children and families. Additionally, other insights, such as the need for support for staff who are impacted when a child dies, have surfaced as a result of the work.

Based on these findings, the report offers a number of recommendations that seek to build on successes and strengths, while addressing identified gaps and inconsistencies. Where possible, the Task Force has already begun implementing
recommendations, such as building closer working relationship with the Coroner’s Office. A key recommendation of the Task Force is the creation of a hospital-wide, comprehensive bereavement program. The Task Force members are committed to continue working with stakeholders and partners within and outside of the hospital to develop and promote best practices in bereavement care at SickKids and beyond.

Recommendations
The interviews with staff and families, as well as the literature review, revealed both strengths and gaps in terms of existing bereavement care practices at SickKids. Based on the data gathered, the Task Force has put forward recommendations
that address a number of areas, including: enhancements to staff education and resources in the area of bereavement care; the need to challenge existing beliefs and attitudes about death as a care outcome and the potential for a dignified death to support a positive bereavement process; and the development of policies and procedures where needed to ensure consistency of bereavement care across the hospital.

1. Develop a strategy to ensure consistent bereavement care is delivered at all times, in all settings.
a. Integrate existing policies into one comprehensive guideline, while making explicit those parts of the guideline that are legislated and/or mandated aspects of care (i.e., Coroner’s cases).
b. Implement and evaluate a triage model to identify families at high risk for post-traumatic stress following the death of a child.
c. Develop a system for staff to refer families who require support following the death of their child (i.e., a bereavement clinic).
d. Develop, implement and evaluate bereavement care plans for every family whose child has died.
e. Ensure the utilization of interpreter services for families with limited English proficiency who experience the death of their child.

2. Create a hospital-wide bereavement program that integrates education, policy, research, clinical care, and evaluation. Consideration should be given to include this resource within the current Palliative Care and Bereavement Service.
a. Centralize all present and future hospital bereavement resources under the leadership of one director to ensure consistent bereavement care throughout the organization.
b. Ensure this program is responsible for the implementation and evaluation of all recommendations put forth by the Task Force.
c. This program is to assume accountability for implementing best practice guidelines throughout the hospital.
d. The Bereavement Task Force is to be reconstituted to become an advisory to the Bereavement Program.
e. Utilize TRAC-PG (Team for Research in Adolescence and Children in Palliation and Grief) as an overseeing body for
research development and implementation in the area of palliative and bereavement care.
f. Integrate bereavement work with other hospital initiatives, such as the New Immigrant Support Network (NISN) and interprofessional practice initiatives.
g. Examination of the bereavement experiences of families from diverse cultural and religious backgrounds is to be considered a priority for further research.

3. Develop new resources to promote best practices in bereavement care including bereavement care across cultures, such as:
a. A parent information package.
b. Parent-to-parent support program.
c. A bereavement website that indicates available internal and external (provincial, national and international) support
and resources.
d. A mechanism through which staff may continue to stay apprised of current literature and evidence-influenced practice.

4. Link with available community resources to optimize their use, foster existing relationships, and create opportunities to develop new partnerships.
a. Work specifically with the Coroner’s Office to improve relationships and care.
b. Work to develop relationships with appropriate external agencies (e.g., hospices, Bereaved Families of Ontario).
c. Work with external agencies with which SickKids is already engaged to make bereavement care a priority in our continued work and collaboration.

5. Provide education about the principles of grief, death, dying and bereavement to all hospital personnel and, where possible, to community partners.
a. Utilize a tiered approach to education that tailors content to various roles and responsibilities.
b. Revise Mock Codes to incorporate after death care, resiliency training/education, and incident debriefing.
c. Develop a hospital-wide support program for staff who work in units/areas which experience a high number of deaths.

6. Implement a standardized follow-up process after the death of a child.
a. Create guidelines that support staff in setting boundaries around continued involvement and contact with bereaved families.

7. Adopt and implement a quality of care measurement system, for example, a tool similar to the Picker for pain (an indicator to monitor quality of care).

8. As is appropriate, continue to engage our bereaved families:
a. Through the implementation of hospital-wide memorial services.
b. Through considering the creation of a recognition wall for the children who have died.
9. Implement facility upgrades to the hospital’s morgue and quiet room.
10. Finalize and approve the draft paper: The Hospital For Sick Children Bereavement Care: An Interdisciplinary Framework for Practice.
11. Create a model of care that accurately conceptualizes the Task Force’s vision for quality paediatric bereavement care that is individualized, family-centred and evidence-based.

The Sasha Bella Forever blog began in 2006 as a tribute to our first daughter and her caregivers as we brought her home from the hospital to die. Expecting just a few days together, we had five incredible weeks. These posts celebrate the life of children with complex care needs and their families and staff partners in care. The posts also share the work of The Sasha Bella Fund For Family Centered Care at SickKids Foundation across the spectrum of care, education and research. From Sasha's experience, the fund and blog focuses on partnership, inter-professional and inter-disciplinary teamwork, palliative and end of life care, patient safety, care for the care-givers, patient and family advisory, peer support and the special challenge of the ICU. Please share, or Like or comment if you are moved by a particular post or think of The Sasha Bella Fund during your charitable giving.Regards,Jonathan Blumberg (Sasha's dad)

The Fund supports family-centered interprofessional care, family advisory, patient safety and palliative care with low cost initiatives like awards, small grants to programs and research, website initiatives, murals, sharing our story and volunteering at the hospital. See a list of fund projects and please consider donating securely online at Sasha's SickKids Foundation page (a tax receipt is emailed immediately) or by calling Laurel at SickKids Foundation.

All donations to a directed family fund like the Sasha Bella Fund For Family-Centred Caregoes to projects at SickKids Hospital with no Foundation overhead.

What is family-centered care? Frank Gavin offered a great definition in the 2005 Family Advisory Council report:

"Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.”

Thanks to all the almost 1000 families who have helped SickKids through The Sasha Bella Fund since 2006 and who in October 2009 helped raise $20,000 for Sickkids Hospital and Bloorview Kids Rehab. Special thanks to the performers who donated their special skills, Sho Mo + The Monkey Bunch, Charlie and Little Fingers, Deb Maes, Bloorview therapeutic clowns and Master Choung Taekwondo club, and The Stockyards, Ravisoups and Mildred Pierce for an incredible lunch. Checkout pictures of the 2009 Fun Day by Peter Fenyevesi and Bryan McBurney.

"After much research and exploration and talking with people at the Sick Kids Foundation we have found the Fund that I think addresses the same goals and priorities that Diane and I have for helping to affect change at SickKids. It's called the Sasha Bella Fund and it's named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006. They do great work, particularly in encouraging family-centred care in the intensive units of Sick Kids ... encouraging family centred practice on the general units, advancing palliative care and support for parents and promoting interprofessional education. It's a fund and a cause we are proud to support and we encourage everyone to take a closer look." Janis Purdy and Diane Flacks

Sasha was born with Alagille Syndrome and pulmonary atresia, serious liver and cardiac defects leaving her ineligible for transplants. Cardiac surgery was risky but without more oxygen to her lungs Sasha would die. Our core SickKids team was the 4D nurses, cardiologist Dr Jennifer Russell, surgeon Dr Glen Van Arsdell, catheterization specialists Dr Lee Benson and Dr Jin-Lee and gastrointerologist Dr Simon Ling. The plan included catheterizations to widen tiny arteries, surgery to install a central shunt at 3 months, more caths and more surgery to partly rebuild her collateral arteries into a pulmonary artery. A blue baby came home after birth and grew into a golden haired 18 month cherub with only short hospital stays. She appeared to thrive; yet as we rebuilt Sasha's heart, her liver weakened. A second surgery resulted in hemorrhage, fever, liver failure, portal hypertension, GI bleeds, and a jejunal fistula to her belly. We accepted Sasha was dying when she required daily blood transfusions. She came home supported by the Temmy Latner Centre, TCCAC nurses and SickKids - we expected 3 days with our peach but she stopped bleeding and lived five precious weeks.